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Understanding the Support Needs of People with Autosomal Dominant Polycystic Kidney Disease: A Qualitative
Katrine Schmidt Rasmussen1, Dinah Sherzad Khatir1,2, Henrik Birn1,2,3
1Department of Renal Medicine, Aarhus University Hospital, Aarhus, Denmark.
Insights
Patients with autosomal dominant polycystic kidney disease (ADPKD) found dedicated clinics helpful for managing uncertainty and gaining knowledge. These clinics improved patient satisfaction and provided personalized support for daily life challenges.
Area of Science:
- Nephrology
- Patient Experience Research
Background:
- Autosomal dominant polycystic kidney disease (ADPKD) is a common hereditary kidney disorder and a leading cause of kidney failure.
- ADPKD diagnosis and management present unique challenges for patients and healthcare providers due to its chronic and progressive nature.
Purpose of the Study:
- To explore patient experiences within a specialized ADPKD clinic.
- To identify patient support needs for managing ADPKD in daily life.
Main Methods:
- Qualitative phenomenological descriptive study.
- Semi-structured telephone interviews with 18 ADPKD patients attending a dedicated clinic.
- Data analysis using systematic text condensation.
Main Results:
- Patients reported uncertainty about their future and a need for personalized care.
- Key themes included emotional coping, decision-making support, maintaining health control, and desire for more disease knowledge.
- Participants valued feeling informed, heard, and more at ease after clinic visits.
Conclusions:
- Dedicated ADPKD clinics enhance patient satisfaction and provide a sense of security.
- Investing in specialized clinics can mitigate patient uncertainty and improve disease management.
- Findings support the value of patient-centered care in chronic kidney disease management.
Introduction:
Autosomal dominant polycystic kidney disease (ADPKD) is a prevalent hereditary kidney disease and the fourth most common cause of kidney failure. Patients may be aware of their condition from an early age or discover it unexpectedly, with varying levels of familial knowledge about the disease. This chronic condition presents significant challenges for healthcare professionals. The study aimed to investigate how people with ADPKD experience their participation in a dedicated ADPKD clinic and to investigate their support needs in managing their disease in everyday life.
Methods:
A qualitative phenomenological descriptive study was conducted, involving semi-structured telephone interviews with patients who attended a newly established dedicated ADPKD clinic between March and April 2023. The data were analyzed using Malterud's principles of systematic text condensation.
Results:
In total, 18 out of 22 patients agreed to participate in the interviews. Six themes emerged from the interviews. Participants expressed feelings of uncertainty about their future and highlighted the necessity for personalized care tailored to their individual circumstances. They reported challenges in coping with emotions associated with the disease and sought assistance in making difficult decisions. Maintaining control over their health and illness was a significant theme, alongside a desire for increased knowledge about their condition.
Conclusion:
Our study supports existing knowledge in this area. In this study, the participants experienced satisfaction with the dedicated ADPKD clinic, feeling well informed, listened to, and more at ease after the check-up. Investing in a dedicated ADPKD clinic could help alleviate the uncertainty that many people with ADPKD experience.
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